Monday, March 23, 2015

Saying good-bye to a fur friend is never easy...

After 15 years, 1 month and 7 days with us, our loyal fur friend Cooper has gone over the rainbow.  He was diagnosed with a brain tumor two years ago and was put on seizure medication.  He also had significant thyroid issues and was being medicated for it.  A year ago he had a vestibular event and was unable to walk.  Although medicine helped, he has been declining slowly over the last two years.  Cooper was born November 4th, 1999 and was adopted from the Homeless Animal Rescue Team on February 14th, 2000.  He shared so many happy memories over those 15 years and was definitely a great shoulder to cry on during the many tough times too.  He was laid to rest on March 21st, 2015.

I find it remarkable after losing someone how many conversations remind you of the relationship you've had over the years.  My friend Vicky reminded me how many long hikes we used to take with Cooper and his friend Max.  They would run through the woods, chase squirrels and swim in the river.  Cooper would run like a deer bounding over the brush without his leash and always came back.  Johnny reminded me of the night we went out to dinner and got back to the house to find Cooper sitting in the doorway with the door wide open!  Clearly it hadn't been shut/locked and he was just sitting there waiting for us to get home.  He was truly a one-of-a-kind dog.  We could let him out to do his business and even with woods in our backyard on Quiet Brook Place he would do his business and come back to the door and push it open with his nose.

The memory I love is one night shortly after Reagan was born that we realized he wasn't sleeping in our bedroom (which he always did).  We had to search for him and we could see him on the baby monitor lying in front of Reagan's crib.  He often would sleep in Reagan's room and was very excited when she moved to a bed and he could climb in with her.  And when Cole came home from the hospital we often would see Cooper go from one of their bedrooms to the other while they were sleeping.  Another memory that makes me laugh is Cole tipping over Cooper's dog dishes and putting all his food in his water bowl to see it float.  Cooper so faithful to the kids and you could tell he loved them dearly.  Over the years he was affectionately called "Coopy" by the kids.  Although Johnny had dogs as a kid, this was my first dog and our first "child" together.

I also find it interesting to reflect on when we miss him most.  It's amazing how many times over the last two days I caught myself thinking I need to let him out.  Or, did I give him his medicine?  Or giving him the leftover dinner food in his dog dish.  Giving him the crust from your pizza was always expected!  And of course not having him follow me or sit at my feet under my desk when I work will be a tough adjustment.  It also became a tradition three years ago to come to the school bus to get the kids.  Today was especially hard when Reagan got off the bus and said it was so sad to not have him there to greet her.

Reagan has taken it especially hard, but the kids have been pretty understanding.  They are asking good questions and I think they are handling it well.  Reagan has asked numerous times when we can go visit him in Heaven.  Of course I tell her it's going to be a VERY long time and I get to go first !  I also remind them that Kendall has never had a dog…now she gets to be with Cooper and he can take care of her!  Cole's questions are very telling about their personality differences.  His first comment after we told him Cooper had to go to Heaven was, "can we get another dog? We should name him Nova."  We talked about how we can't go to Heaven because only your spirit goes to Heaven.  So his next question was, "well then what did the vet do with his bones?"  Quickly followed with, "so how do you get to Heaven if you don't have bones?"

Cooper was truly our best friend and will never be forgotten.  We love you !

Monday, March 9, 2015

Angel Gown for Kendall

As many of you know, I took pictures of Reagan in May playing dress up in my wedding dress because I decided to donate it.  The pictures were adorable and although it was hard to box up and say good-bye to the dress, I felt like I was making the right choice.  Knowing that Angel Gowns in Virginia was inundated with dress donations after their Channel 7 news broadcast, I wasn't surprised I didn't hear back from anyone.  If you want to watch the broadcast about this amazing group of women, here is the link on YouTube.

I did include a letter with my dress about our journey with a picture of our precious angel, Kendall, hoping I would hear back from the seamstress who was chosen to sew dresses from my gown.  For those of you not familiar with this program, this group of volunteers restitches donated wedding dresses into angel gowns for babies who are called to Heaven after birth.  They make gowns in differing sizes for micro preemies up to full birth deliveries.  They also make demise pouches for babies too small for a gown or who have skin that is too fragile.

I recently received a message from the seamstress, Sherry!  I was so excited to "meet" her on FaceBook and learn that she would be starting to work with my dress.  Sherry asked about Kendall's weight and made the first dress for her.  I can't imagine a more perfect dress to honor our precious angel.  Sherry said when she read my story she imagined Kendall dancing in this dress in Heaven.  If Kendall is anything like her sister, Reagan, I know she would love dressing like a princess and twirling until she gets dizzy.  Sherry has already made six gowns from my wedding dress to include a dress from the lining!  I am amazed at how each dress looks so different even though they are cut from the same cloth.  Each one delicately designed to be soft against the skin.

If anyone is interested in getting involved with this great organization, they are currently looking for seamstresses.  Once they are able to catch up with their supply of wedding dresses they will be accepting dresses again.  Check their website for the latest information on what donations they need.  They often need ribbon, thread, and boxes to ship gowns, etc.

Although I am not involved in stitching these beautiful gowns, I love knowing that my dress has been used to help other families who will have to face a journey like ours.  I only wish these were available when Kendall was born to help us see her beauty and innocence during such a difficult time.  These gowns really do help me imagine her dancing in Heaven.

We were lucky enough to meet Sherry and her sister Brenda who also sews gowns for Angel Gowns in Virginia.  They live in Stephen City but met us in Purcellville to give us Kendall's dress (pictured above with a blanket I had as a baby) and meet Cole and Reagan.  We hadn't shared much about this meeting with the kids…mostly because it's sometimes hard to explain.  Cole immediately gave Sherry a big hug and Reagan immediately wanted the gown for her doll.  I explained that this dress is very special and that it was for Kendall.  Reagan immediately asked when we could take it to her in Heaven and asked how we would get there.  We've talked about Heaven, but it's still somewhat confusing for them.  I explained that it wasn't our time to go to Heaven yet and that we would be keeping the dress to remember her…which created even more confusion.    Again, I explained that only our spirit goes to Heaven.  To which Reagan responded, "It's just not fair we don't get to have our sister with us. I really wish I could meet her.  I bet I would like her."  To which I responded, "Yes, honey.  You are right, but if we work really hard, we too will get to go to Heaven one day to be with her."

Wednesday, February 25, 2015

Kennedy Krieger, UVA, INOVA Loudoun, no more brace…WHAT?!

You would think I'm still on holiday vacation!  I have been terrible about posting so here it goes with a whole truck load of updates.

Our year started with a trip to Baltimore for an evaluation at Kennedy Krieger Institute (KKI).  I think I've mentioned we are unable to go back to UVA this summer so we are looking at other programs for Reagan.  We had a great visit and are currently waiting to hear whether KKI will have enough kids for a group session that Reagan can join over the summer.  We would live in Baltimore during the week and come home on weekends.  She would be in session 5 days per week for 6 hours per day.  If there are not enough children for a group session (three of similar age and ability) then they have offered a program starting May 26th which will be 5 days per week but 3 hours per day which requires us to pull Reagan out of school.  We are concerned about the impact of her missing the last 3 weeks of school and definitely prefer the summer option and are praying that works out for us.  I have a meeting setup with the Principal to discuss the impact on Reagan's transition to 1st grade next year if our only option is to have her participate the last three weeks of the school year.

Given we will be at KKI for Reagan, Cole will miss his usual OT session.  We requested an evaluation for Cole to determine what services may be available for him while we are there.  After the evaluation they said he would definitely benefit from services and recommended weekly OT sessions in addition to sessions at the Sensory Gym and a referral to the MD School for the Blind.  Once we have the dates set for Reagan's program we will be able to move forward coordinating these services.  We are hoping to have more information by April.  Until then, we wait.

The other exciting activity in January was Reagan and Cole's belt test for Tae Kwon Do. Neither had ever done a belt test before and didn't what to expect.  Both had a report card component of the test completed by Mom.  In addition, Reagan had to memorize 8 questions, 8 Tae Kwon Do terms and had to be able to count to 10 in Korean.  Given Cole is in the "cubs" class he didn't have anything to memorize. Needless to say, she studied for weeks and was very well prepared.  Both kids were given their yellow belts and were super excited to get their first trophies!  Master Lee is their main instructor, but they also have classes with the owner, Master Choi.

One big change for Reagan becoming a yellow belt is that the classes started to incorporate sparring.  Although very apprehensive at first, she has enjoyed being with her new friend Tory and is warming up to the idea of the pads and helmet.  Unfortunately she is still resisting putting on the arm and leg pads.  The Masters are being very understanding and aren't pushing it so we'll give it some time and hopefully she will realize over time that they will protect her if she gets hit!

In addition to the belt test in January, they also participated in a team competition in February.  They had a few preparation sessions where they talked about team work and the importance of working as a team.  Then for the competition they were divided into similar belt color groups and competed against each other in front of the Master.  Reagan was pretty excited she was able to compete with her friend Emma!

Reagan also had an appointment with her Physiatrist (Physical Medicine), Dr. Morozova in February.   When Reagan had her surgery in 2009 we didn't know if she would ever walk.  We were so excited when she started walking at 13/14 months that having an orthotic was a minor inconvenience.  Over the last 4 years she has had a new brace more than once a year and they got bigger and then started getting shorter.  And now we have BIG NEWS!  Dr. Morozova agreed that she doesn't see a difference in the way Reagan walks with and without the brace.  So we are taking a trial period without the brace to see if we notice any increased falls or change in her gait.  So far so good!  Most people have NO IDEA how hard it is to find shoes that fit with a brace.  So this is SUCH exciting news.  Not to mention, the last brace was $855 and it's one more appointment and one more factor in the equation when troubleshooting issues with blisters.

In January we also switched insurance companies which required us to leave Children's Therapy Center.  After more than 5 years there, we said good-bye with great apprehension.  But at $1200/month for therapy, we couldn't justify staying.  Both kids transitioned over to INOVA Loudoun Hospital in February.  Reagan is now seeing Jason for OT and Lillian for PT and Cole is seeing Kelly for OT.  Although we have only had a few sessions, so far we are very happy at the new facility and excited about having new goals and a new focus.  One great benefit we are seeing with OT is that the therapist is asking Reagan if there are things she does that are hard and is asking if she wants to work on those things in therapy.  There are a few moves in Tae Kwon Do that are very hard for her and she has asked to work on those.  We are very excited to see her taking an active role in trying to make progress and especially excited to see her start to make that progress and realize why therapy is so important.  Good things to come!!

As if that wasn't a busy enough start to the new year, we were also able to get a follow-up appointment with the Developmental Pediatrician in February.  As you may remember, our first appointment came after a 6 month wait and was a terrible experience because Cole was severely constipated and unable to complete the assessment.  This session he was in a great mood and the Nurse Practitioner, Sue Lansbury, was able to complete the Peabody Vocabulary Picture Test (PVVT) assessment.  And would you believe Cole was assessed to be at the cognitive level of a 5 year 6 month old?!  We were so excited to see him do so well on this test.  There were four pictures on each page and he had to point to the picture  that the tester asked him to.  Overall we had a great appointment and talked through our concerns.  We look forward to going back at the end of the summer to touch base before school starts in the Fall.  Sue will be a key element of support when it comes to explaining and advocating for the services and modifications Cole will need in the school setting.

As a follow up from the CHAMP study we completed in August at UVA, we had to go back for the 6 month evaluation.  As you may remember, she had a battery of activities she had to complete with both her left and right hands.  This assessment was done 1) before therapy, 2) right after therapy, 3) 6 months after therapy, and 4) 1 year after therapy.  The goal of the testing is to look at how much carry over is seen from the gains during therapy.  It was good to be back in Charlottesville even if it was only for 3 hours.  It was a long day of driving, but we stopped in to see Sue and Ruth and brought them cookies.  It was good to see everyone!

We had a crazy weather week last week with so much cold weather and snow that the kids were out of school almost all week.  We took advantage of the snow days and took a trip to Udvar Hazy Air and Space Museum one day.  The kids had a blast - their favorite part was the space simulator that played a movie in an enclosed cabin that felt like you were taking off into space to launch a satellite.  The trip was inspired by Cole's keen interest in space and planets.  His passion went into full swing when he saw the astronaut costume!

We also took advantage of the snow days and spent a day at the Baltimore Port Discovery Children's Museum.  It was a great opportunity to play but also have some educational components to our day.  It was a bit of a drive, but definitely worth it!  Although they loved the three floor climbing section in the middle, both kids found the golf ball tube pretty cool.

Unfortunately we also had a sick daddy one day so we decided to make him his favorite chocolate chip cookies!  We had three full days of focused time on hand strengthening and "lefty" use.  It's always nice when you can weave play into work and it's transparent to the kids!

We hope to have a very boring March with a possible mini vacation during Spring Break.  Then we will gear up for both neurosurgery and ophthalmology appointments in April.  Unfortunately we've had 5 separate days where Cole has experienced severe headaches.  And although they only lasted 30-60 minutes, we are nervous he is having intermittent shunt malfunctions.  Unfortunately it can't be diagnosed  unless we make it to the CT/Shunt Series machines WHILE he is having the episode…which is clearly impossible.  We are currently tracking the dates/times he has head aches and trying to rule out any other possible explanations such as constipation or dehydration.  We have been in contact with the neurosurgeon and will monitor the situation until our appointment.  Luckily Cole recovers quickly and goes about his day.

I have promised to share some of the kids' funny comments.  I have two to share in this post.  They are probably funnier if you know Cole well, but the way he thinks is absolutely astonishing to me!  He looked at me and held up his hand and gasped.  He said, "Oh NO!  WHAT happened?"  I said, "I don't' know honey.  What happened?"  He said, "that finger is littler than the other ones.  How come?"  I said, "Well that's your thumb, it's supposed to be shorter."  He said, "Well that is just ridiculous."

The next one is a little PG-13 so hopefully I won't offend anyone…but I found it hysterical.  Unfortunately Cole suffers from constipation.  It has been two weeks with no movement and a full cap of Mirilax the last 6 days in a row and still nothing. Unfortunately we had to use a suppository…which he HATES.  After many tears, cuddling and finally relaxing, he looked at me and said, "Hey mom.  When I grow big and you grow small I"m going to give YOU a suppository."  Man I love that kid!

Thursday, January 1, 2015

2014 Ends a Six Year Stretch!

What a great year!  We were very busy with 27 doctors appointments between Cole and Reagan plus 110 occupational/physical therapy appointments and 18 therapy appointments at UVA in August.  We are very excited to also have broken a six year stretch of hospitalizations.  Johnny's serious car accident/broken in 2008, Reagan's brain surgery in 2009, Danielle on bed rest, Cole and Kendall in 2010, Cole again twice in 2011 for not breathing, Reagan in 2012 with the return of seizures, and Cole again in 2013 with concerns of a shunt failure.

Even though we did end up in Urgent Care this year with several stitches on Cole's chin, we don't count that since it wasn't an overnight at a hotel.  We are considering this trend to be broken and look forward to another year of health in 2015!

The kids had a very fun Christmas.  All Reagan asked Santa for was a Leash Pup, Flutterbye and a Paw Patrol stuffed pup named Skye.  Cole asked Santa for "a Matchbox car…just one."  He was very excited about getting the Transformer Rescue Bots Chase and Heatwave and the flatbed/Jeep even though they weren't on the list.  The kids were also excited that their Dad took off two weeks from work!  It was so nice having him home!

After Christmas we surprised the kids with a trip to Hershey, Pa.  We took them to Sweet Lights which is a two mile drive through the woods to look at Christmas lights.  Then we headed to a Hershey Bears hockey game and back to the Hershey Lodge.  The kids were super excited about being at a hotel and we even made time for a quick swim at the pool.  The visit in the hotel lobby from a large stuffed Recesses Cup and chocolate chip cookies and milk on our pillow were icing on the cake!

On the second day of our vacation we took the kids to Hershey's Chocolate World to see how chocolate was made.  Reagan decided her favorite part of the entire trip was this ride through the story and especially the singing cows with hair bows explaining about the milk used in making chocolate.

After a visit to Chocolate World we spent the day at Hershey Park.  I had taken the kids twice over the summer and although they both had fun, Cole was apprehensive about some of the rides.  Well that hesitation was COMPLETELY gone.  He was so excited to run after Reagan onto every ride.  We spent the entire day at the park and they slept the whole way home!

Johnny was at the fire house for New Years Eve but the kids and I had a low key New Year's Eve at home with the Coullahan's and Golino's.  We did have a new record though - the kids stayed up until 11pm!  Perhaps next year we'll actually make it to see the live ball drop instead of the "staged" one.  But honestly, the kids are just as excited about the advanced show and don't really know the difference yet.

As we look into 2015 we are excited about all that may lie ahead and we are excited about seeing where our adventures take us.  We currently have 12 doctor appointments on the calendar, continued weekly OT for both kids and bi-weekly PT for Reagan in addition to a change in our medical insurance.   I'm sure this means numerous letters of medical necessity to the medical review board and proof of continued therapy requirements.  This year will also require a move from our beloved program at UVA's Children's Hospital to new program.  We hope to find another intensive summer therapy program that is a good fit.  Kennedy Krieger is our top pick but are still working through the details of how to make the schedule work. Secretly I am also hopeful that 2015 is the year we are able to discontinue Reagan's brace.  Time will tell, but we are hopeful this may be in our near future.

Thank you for continuing to follow our journey and we look forward to sharing our adventures next year!